Tuesday, March 20, 2007

On Being Independent

Parents often say that the most important goal they have for their autistic child is that the child be able to live independently as an adult. And it's quite understandable that they feel this way, considering how strongly prejudiced our society is against anyone who does not fit into the "independent" category. Not being independent is commonly equated with poverty, inferiority, abuse, and institutionalization. As a result, parents often embark on a frantic quest to "rescue" their child from this dreaded fate by means of various therapies, no matter what the expense.

What does it really mean, though, when we say a person is independent? There are so many cultural variables that go into determining that status, and often they're quite arbitrary and have little to do with a person's actual abilities.

By the standards of our society, I currently fall into the "independent" category because I have a house, job, and car. I don't personally do the maintenance on my house and car because I lack the mechanical aptitude, but luckily for me, our culture allows employed people to qualify as "independent" even if someone else does all their auto and home maintenance.

Now let's suppose our economy went into a deep recession and I lost my job and had to move in with my parents. All of a sudden, I would be transformed into a dependent autistic adult and therefore an object of pity, even though none of my skills would have changed in the slightest. I might choose to spend my days improving society by tutoring illiterates or serving meals at a homeless shelter, but as long as I wasn't being paid for it, I would still be seen as a dependent person who did not contribute to society.

If I had the good fortune to buy a winning multi-million dollar lottery ticket while living with my parents, however, I would bounce right back into the category of socially valued independent people, despite the fact that I was not working. I could go live in some decadent tropical resort and spend all my days drinking margaritas on the beach and doing absolutely nothing productive, but I would still enjoy a much higher social status than any of the working people there.

Let's say that after living in hedonistic luxury for some time, I get ashamed of myself, give away my fortune to feed the world's hungry, and go live in a mud hut somewhere and reflect on the meaning of human existence while volunteering to treat sick children in a village clinic. Not only would my social status drop through the floor, but someone probably would suggest to my parents that they try to get a guardianship over me to protect me from myself.

If I spent the next few years as a housewife raising kids, I would go back to being a respected independent adult, regardless of the fact that my husband was paying all the bills. My contribution to society would be seen as noble, and I would be a shining example of family values.

But if my husband took all our money and ran off to Jamaica with a bimbo, leaving me as a penniless single mother on welfare in public housing, I would instantly become a despised burden to society, even though I was still the same devoted mom taking care of the home and telling stories to my kids.

Then, if I turned those stories into a bestselling book and got a fat contract for several sequels, maybe I could be a celebrity, appearing on talk shows and invited to be the guest of honor at conventions. People would read enviously about me in tabloids. I could live in a huge mansion with a cook, a housekeeper, and a chauffeur.

Some years later, let's say that my books are no longer popular and I can't afford to keep the mansion and the servants. I then develop some sort of disabling physical condition that makes it difficult for me to do household chores. My disability insurance company arranges for a household staff assistant to help me with cooking, cleaning, and running errands. Now I'm no longer considered to be independent, even though my staff is doing exactly the same work that my servants used to do when I was a lazy able-bodied person.

Perhaps my health eventually improves, and I no longer need household assistance. By now, I'm old enough to start drawing on the retirement accounts that I set up when I was a successful author, and I settle down to enjoy the relatively comfortable social status of a middle-class retired person.

Well, until I develop health problems again, that is. Then someone is sure to start grumbling about all the resources I'm wasting with my old decrepit body, which has inconveniently stayed alive longer than the actuarial charts predicted, and ought to be considerate enough to drop dead and get out of the way.

If you're thinking that all of this is totally random and weird and has nothing whatsoever to do with autism—that's the whole point.

12 Comments:

This is a great commentary on the arbitrariness of societal judgement of worth. It was interesting that, when I read the "housewife/mom" bit I squirmed to remember how long it took me to get comfortable with not working & being a stay-at-home mom. It certainly wasn't society's image of what I was doing that helped me to get over it, but time & the increasing intensity of raising an autistic child. To be honest, although we are interested in his being able to live "independantly" as an adult, we haven't put too much thought into what that entails... (I'm practicing the Buddhist philosophy of not getting too attatched to the future :). Your comments are good to keep in mind...

I think traditional definitions of "independence" vs "dependency" basically depend on where the money is coming from to cover the support services a person consumes. If it's out of your own pocket then it's "acceptable" because then there is no perceived drain on society as a whole (economically or otherwise). If the government or your family has to pay for it (where they normally wouldn't) then everyone starts looking to their own pocketbooks and complaining, "Why are my tax dollars going for this?" or clucking in sympathy with the parents, "I wouldn't want to have to keep on supporting my kids well after they turned 18, or graduated from university at the time when I should be preparing to direct my hard-earned dollars to a cushy retirement."

Most of it boils down to economics, probably in part just because it's easier to measure a person's contributions to society when you can put a dollar figure on it. Nebulous things like volunteer work or even "Mommy duty" are harder to measure in a comprehensible way. (Which is not to say "impossible" ... just harder, and usually more costly.)

I have to say that when I fight with school personnel about helping Joey to be independent (and the law says the schools are supposed to be preparing him for a life of independence and employment), what I mean is "not institutionalized." I don't want him to live a life where his every move and meal is dictated by someone else. He's four and frustrated with lack of choices... what will that frustration be when he's 40? "Independent" refers to being responsible and able to care for yourself, instead of having someone else do EVERYTHING for you. Having an aide would help Joey be independent, and he may always need one. There are many children I am seeing transition into "full residential" settings and that is what they need to survive. If that is what thaat person needs, then that is what that person needs. However, I do note that not only do the school folks think Joey will "never be independent" and so don't bother to try, there are parents who are horrified by teh idea that my son may never move out of my house, may require an aide, and think less of him because of these possibilities.

And we're talking about possibilities- we have no idea if he will actually need these accommodations!

Thank you. I've been wanting to write an entry like that for a very long time, but I think you did a better job of it than I could have.

Anonymous: It's not that simple, although it's a part of it. For example, I used to work at a government funded university as a researcher, writing Free Software. I was at that time considered independent. Now I'm on disability (i.e. still government money), write just as popular (if not more so) Free Software, and am considered dependent.

Just for your entertainment... I now have ten copies of this stupid issue. I haven't yet been able to actually read the article. At least people are thinking about us in our little corner of the world, right?

Oh I don't know.... maybe we could look at independence this way; there are 5 children waiting to cross a road, one is in a wheel chair, one is blind, one is deaf, one can't speak, and one is autistic ( classical - you know the symptoms; not hfa, not as). So its a busy road, lots of cars around. who would, in your opinion, need "help" at this point. yes, the autistic one, he needs to be helped from running out onto the road. So what is dependence.... oh I dont know

I tend to agree with the first anonymous post. Just as "verbal language ability" seems to be usually used as a marker for how high "functioning" a person is, so "economic contribution to society" seems to be the marker used to denote "independence".

Although there are definitely some inconsistencies, the married homemaker is viewed by society as a partner with the spouse and thus their economic contribution is viewed collectively, while the unemployed single parent is viewed as a single entity.

Also, the difference in elmindreda's situation was one of being employed in a job for which she had to compete in an open marketplace (and which had productivity expectations attached to it), vs. receiving what is considered an entitlement with no expectations of performance.

None of the above is necessarily right, it's just the way it seems to work at present.

Aren't we talking about the person's POTENTIAL independence though? I agree that it is societal constraints that dictate much of potential independence. Look at the arguably genocidal practices of China's limiting family size and the unintended consequence of many female babies being aborted because of their perceived 'dependence'.

Don't parents strive for giving their children the greatest potential independence, through education, through (sexist, I know) primping them to attract the best husband or by simply trying to give the child 'what we as parents didn't have'?

Autism 'elimination', for lack of a better word, is just another outcropping of this desire to improve their progeny's chances in the world, despite the obvious bias against the condition as something other than a way of being.Bill

The problem here is the use of the word "independent". That's not what's meant at all. A more accurate phrase would be "socially desired" (as in desired by society, not necessarily what one would desire for society).

A person with a job is doing a task that's presumed to be useful and important. (The idea that usefulness and importance are demonstrated by people's willingness to pay for something is an idea give way too much credence in academic circles.) So working is socially desired, and labeled with the wholly inaccurate term, "independence" to make it seem good and praiseworthy.

Spending money helps keep our current economic system functioning, and is socially desired for that reason. So even if you don't have a job, spending money from your lottery winnings/retirement fund/husband's salary is socially desired, and "independent".

Hiring people when you don't need to is considered a social good (job creation), and therefore being a wealthy celbrity who hires maids and cooks is considered you doing something for others, and "independent".

Spending government money is considered socially undesirable (as it can lead to more taxes, or less funds for other things), and is therefore labeled "dependant" and "a drain on society". It is considered undesireable enough that it neutralizes other positive benefits (like spending money, and raising children) and still leaves people marked as socially undesirable. I'm not entirely sure why it's seen as such a negative, but there's a lot of people who are willing to pay taxes for all sorts of projects that are supposed to indirectly benifit people and get intensely offended that their money might go straight to someone.

This is also why attendant care is seen as a negative. Because, even if you are paying for it yourself now, it's still something you need. So if you couldn't afford to pay for it in the future (and all people with disabilities are presumed to be likely to lose their economic status), you'd still need it. And someone would have to pay for it. So getting attendant care that you might need to have publically funded is assumed to be dependant.

And doing volunteer work that doesn't contribute to your economic status doesn't get you "indpendence" points because you're doing things that, in theory, people don't value enough to spend money on. Or you're doing things that people do spend money on and (again, in theory) choosing to do it in such a way that you make no money.

So no only does it have nothing to do with autism, it has nothing to do with actualy independence. It's about using the label "independence" as a reward for the socially desirable.

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This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010